I'm really honoured to announce that as of today I've become a patron of the Teddington Trust charity.

In March I heard a lady called Nicola Miller give a TedX talk about the Teddington Trust, a charity she'd set up after her son Edison was born with a condition called xeroderma pigmentosum (XP).

Effectively, this means that Edison and others who live with XP can't be exposed to direct sunlight, or even ordinary lighting, so either they have to hide away or wear a protective suit.

In October Edison and his family came to the SayYesMore Yestival and while we couldn't control the weather, we took the decision to ensure that every tent and venue had LED lighting so Edison could sit back and enjoy the entertainment like everyone else. He's an awesome kid with a massive smile and even bigger hugs - an inspiration to anyone who has felt held back from getting on with life.

Most of us don't have to think twice about walking into sunlight and enjoying the great outdoors, so in the years to come I hope to bring some awareness to the fact that we're not all that lucky, and that with a little understanding and help those who live with XP can do whatever they want to do, even if it is undercover.

To find out more about the Teddington Trust visit www.teddingtontrust.com and give Rare Revolution Magazine a read - it's a digital mag giving a voice to those who live with rare and often unknown diseases.

Nicola Miller delivers a Call to Action to join the #RareRevolution. Nicola is co-founder of rare disease charity Teddington Trust, and Editor and co-creator of Rare Revolution Magazine. Nicola talks with passion about the importance of better representation for those affected with rare disease across all walks of life and how the key to achieving this is RARE education.